Share this story

The World Parkinson Congress 2019 will be held at the International Conference Center, Kyoto, Japan from 4–7 June, 2019. The triennial World Parkinson Congress unites the global Parkinson’s community of clinicians, specialist therapist, carers and people living with the condition, for a scientific and educational four-day programme. Visit the WPC2019 website and the hashtag #WPC2019 for more information.

The World Parkinson Congress in Portland changed my life

Heather Kennedy

World Parkinson Congress 2019 Bloggers: Heather Kennedy

Perspectives

Author: Heather KennedyPublished: 7 March 2018

Prep: Cook: Serves:

In the third piece in our series profiling the bloggers supporting the World Parkinson Congress 2019, we talk to Heather Kennedy, AKA Kathleen Kiddo, who blogs about how – despite Parkinson’s – she’s more alive than ever before

Do you have a particular audience in mind when you’re writing?

Primarily, I write about compassion as the end game, so I post mostly uplifting but brutally honest and sometimes comic stories for those who suffer from chronic pain.

Is there an aspect of Parkinson’s that you’re most passionate about?

The non-motor symptoms and side-effects that aren’t visible to the untrained eye. In essence, the dreadful and menacing iceberg effect.

How widely read is your blog and in which countries?

My audience is made up primarily of American women between the ages of 30 and 70. Readers in the UK and Canada are tied as close seconds, with approximately 2,000 readers in Eastern and Western Europe, Latin America, Asia and Africa. Hard to say specifically where, but Ireland, Scotland, and Norway appear prevalent.

Have you been surprised by the global audience and level of interest you’ve attracted?

Yes! I am surprised anyone even reads my posts! My initial intent was to be helpful when those with degenerative brain diseases felt despondent or abandoned. It’s an isolating situation to find yourself in and not everyone has access to the communities like the one I enjoy in California.

Which of your posts has attracted the most interest from your readers?

Anything remotely critical of Trump’s policies or changes to our healthcare or medical research seems to bring out extremists. I’ve had hate mail and death threats on Twitter. I’ve also been slammed and spammed for posting critical financial information about politicians as they interact with drug companies and lobbyists.

Talk us through your routine: when do you find time to blog?

Unless I have to travel or go into the city, I get going sometime between 7am and 2pm. Sometimes I stay up all night to finish short stories. I take breaks for movement, errands, sustenance and socialising.

What physical challenges do you face in writing and do you use any technology to support you?

This has been my most frustrating impediment! Dragon Dictation may be great for some but voicetext tools are not my preference. My handwriting is a micrographia mess, but a pen and paper will always be my favorite portal into a story. Since time is scarce and ideas come faster than hands can move, I usually dictate or text with my thumb from a tiny phone screen. Editing slows things down so often I’ll just release an imperfect piece just to keep things moving along.

What do you hope people will take away from reading your blog?

Hope, information, connection and maybe even delight!

Heather Kennedy with her children

How did you get involved with the WPC?

The World Parkinson Congress in Portland changed my life. Suddenly I found myself in a room with thousands of people from all over the world and I did not have to explain or even consider my symptoms! I could be myself, just as I am in each moment of this unpredictable Parkinson’s journey! I’m honoured to join the other writers in support of their blog.

Can you share any memorable moments from the last one you attended?

I was standing in the middle of the photographer Anders Leines’ exhibit with tears in my eyes when I met him with Rune (Venthe) and Reider (Saunes), who have all changed my life for the better. Knowing there are such generous hearts and kind comrades softens the blow of this cruel condition. It would also be the first time I met Vicki Dillon, Sara Riggare, Jon Stamford, Emma Lawton, et al. This new family is not only inspiring because they manage PD, but because they are miraculously talented and fascinating individuals.

What are you most looking forward to at WPC2019?

Well, we are heading to the motherland of karaoke, and you might know how I feel about song and dance being vital for Parkinson’s management. I am excited to see everyone and glean more information from the experts that I can share with my readers. There is much to absorb and process, which makes these events both exhausting and invigorating. Eli – WPC executive director Elizabeth Pollard – is a rock star to pull all this together and I’ve never been to Japan. Someday I’d like to read something I’ve written about Parkinson’s at a WPC. If we must suffer so, at least we can enjoy a good belly laugh. Send in the clowns… and Kathleen Kiddo!

Share this story

The World Parkinson Congress 2019 will be held at the International Conference Center, Kyoto, Japan from 4–7 June, 2019. The triennial World Parkinson Congress unites the global Parkinson’s community of clinicians, specialist therapist, carers and people living with the condition, for a scientific and educational four-day programme. Visit the WPC2019 website and the hashtag #WPC2019 for more information.

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”